You tell me that you get it. But do you?
All you see is us with our four children, living in a house with a swimming pool and owning a large car. We have a dog and we try to get the kids out every weekend. Once a year, we go on a big family holiday. You see our children are happy. You see us letting our eldest son eat a steak or oysters. You see us at Disneyland, or snorkelling on the Great Barrier Reef. You see us going to the rugby and meeting the captain of the Wallabies. You have seen us giving our kids wonderful birthday parties, and (second-hand) cameras as presents. You see us getting the best parking spot, right at the door most times we go out. You see us receiving special treatment by airport staff, and being given a quick exit past the crowds. You see the wonderful photos we post, where we all look like we’re having a great time. You think we live beyond our means. Maybe we do.
But you don’t get it.
Young boys are dying from Duchenne. Not in their 20’s, but at 10 or 12 or 16.
James is 13. He’s more than middle-aged. He’s most likely in the second half of his life. At 13.
Imagine knowing your child was already more than half way through their life at 13, possibly even towards the end of their life? What would you do? Would you want to work long hours in the city, and spend valuable time commuting there and back? Would you miss out on those important years in your child’s life whilst he is still able to walk? Still able to use his hands? Would you honestly feel good about yourself knowing that, when he’s gone, you spent all that time somewhere else? Missing out on those last moments that you will never get back? Will you just let him sit at home every school holiday and not use that time to help him build a bank of memories? Or give him to someone else to look after during those holidays? Would you?
We’ve been asked why I don’t have a job. The truth is, I’m trying. I work every day on a business I hope will eventually bloom and flourish, a business that I can work around the needs and demands of her son. You see, we are well past the honeymoon phase. This is as good as it will get, and this is as good as we will ever see it again. Duchenne is progressive and degenerative. That means he gets weaker, day by day. Each day, he needs more and more help, more support. He tires when he writes. He tires when he walks. He tires when he sits on the sofa. He tires when he eats. He tires when he talks. To be honest, he can barely walk and will be off his feet for good way too soon. Eventually, he won’t be able to do anything himself. Eventually, he will be too weak to even lift his hand. So for me to have a “normal” job is not possible. We don’t have family or friends who we can rely on to help us. It’s just us. We get 6 hours per week where a Disability Support Worker comes in, who massages & stretches James’s legs. But who will look after James if he gets sick? If he is in hospital? During school holidays? Or take him to the many specialist and therapist appointments that he needs? Who will look after his younger siblings whilst his father takes him to hydrotherapy each afternoon? Have you ever thought about that? We are both working towards a solution that will see us able to care for not only our son with Duchenne, but our other unaffected children as well.
I’m sure there will be those that say that schools provide holiday programmes for kids whose parents work. But no matter how many times we tell others how to look after him, no one knows how to do it all. Not everyone will look at the ground where he is walking, to see if it’s level. Or make sure that he’s not walking too fast. Or help him in and out of a car or a seat or his wheelchair. Not everyone knows to watch him when he eats, as he is a choking risk. Not everyone knows how to give him his medicine, which needs to be taken at a particular time every day. Not everyone understands the help he needs with toiletting, or getting changed. Or putting on his shoes. Not everyone understands how serious it will be if he falls and breaks a bone. Not everyone understands that a simple broken bone could result in death for him. Not everyone understands the fear we have each time he is exposed to a child with an illness, knowing that his immune system, respiratory system, and cardio system are all weak, and that something as simple as the flu or chicken pox can kill him. No one understands the range of emotional and behavioural issues he has, which often impact everything we do. No one understands the abilities he does or doesn’t have. Not even extended family. The only people who truly understand what looking after him entails is us. His parents. And there is no way in the world that we will put his life at risk by allowing someone else to take on that responsibility.
People say they were shocked that we took the entire family overseas to America a few years back, they said we should have only taken James. Really? Would you take only one child on a “holiday of a lifetime” and leave your other children at home? When their lives are so compromised as well? We can’t take our kids for spontaneous walks on the beach, spend a day in the surf, go snow skiing, or hiking, or bike riding. We can’t go on camping trips together. And if we can’t do it together, then we don’t do it at all. Already, James is excluded. He has been excluded from most school excursions as they are not suitable for a child in a wheelchair. He can’t take part in school swimming carnivals or sports carnivals. He can’t play soccer or football, instead he sits on the sidelines and watches with a combined look of sadness and anger on his face. He plays on his iPad. By himself. He plays xbox. By himself. He goes to hydrotherapy. By himself. So why would we extend that exclusion to his holiday of a lifetime? He hates not being like the other kids. He hates being “the odd one out” or “special”. When we talked about going to America, we said it was a trip for him. And he turned to us and said “No, it’s not for me. It’s for all of us”. He wants to be included. He wants to fit in. And most of the time that’s not possible. But with a family holiday, there was no way we were going to exclude any of them. Not James, from having a holiday with his best friends, his siblings. And not the other 3 kids, who miss out on so much as well. It was the holiday of a lifetime. A family holiday of a lifetime. I’m sorry if you can’t understand the importance of that. As I’ve already stated, you don’t get it.
I remember being told a few years back that we were coming to the end of the “honeymoon” period. James is transitioning from walking to coming off this feet for good. This has been an incredibly difficult time. His meltdowns are frequent, his frustration abounds, his anger is constant, and his sadness is all encompassing. Have you ever thought about what it would be like to see your child losing all their abilities and start relying on you for everything? Does your 13 year old child need you to wipe his bum or dry his balls? Probably not. And if he did, I’m sure he’d feel pretty embarrassed, especially knowing his friends can do it all themselves. Imagine being 13 years old and probably never going on a sleepover, unless mum or dad can come along. Or going on a school camp without a carer. Imagine knowing that the day you turn 18 (if you get that far) will be spent with your friends helping you to drink a beer through a straw, because you can’t lift the glass to your lips. Imagine hearing your child talking about what sort of car they will buy when they grow up, knowing they will never get their drivers license. Or hearing them talk about what sort of daddy they will be. It makes my heart hurt, just thinking about it. Knowing he will never be able to do those things. Imagine KNOWING that your child is going to die, but first their bodies will completely waste away until they are basically quadriplegics. Except he can still feel your touch. Imagine knowing that you have to plan your child’s funeral, before they even become an adult.
Here’s the crazy thing though – some people have actually been jealous of those few things we have experienced. Our Starlight Foundation trip to the Great Barrier Reef, our trip to Disneyland, free tickets for one of us into theme parks, and then quick access onto the rides. And let’s not forget disabled parking, which is situated nice and close to all the action. Oh yes, and we get to board the aircraft first and have priority seating on public transport. But what you seem to forget is that we would give it all up, every single thing, for a healthy child. Most of you are lucky, most of you will never have to even think about how blessed you actually are. In our life, we have to research and thoroughly review any place we stay when on holidays, as it has to be wheelchair friendly (and wheelchair-friendly doesn’t just mean that it is all one level – a power chair can’t even get up a single step!) That sort of accommodation always costs more. And a wheelchair-accessible vehicle is prohibitively expensive. Most playgrounds don’t cater for kids with disabilities (although there are many popping up that are very autism-friendly, just not wheelchair-friendly). Visiting friends and family is fast becoming a thing of the past, as most homes are not wheelchair-accessible. The same goes for parties and other outings. Unless family and friends come to us, we won’t see much of them. We have to fight with ignorant people who think disabled parking is for anyone. And then abuse us when we pull them up on it. I’ve even been abused for using a disabled parking spot with my son, because “he needs the exercise anyway”. And then we have the issue of toileting in public. Usually there is only one disabled toilet, and it’s often used by able-bodied people who find the regular toilets an inconvenience (or they don’t want to do “number twos” where others can smell/hear it (of course, disabled people love smelling the stench of an able-bodied person’s shit!). They forget that their convenience is our inconvenience. The way I see it, you take the good with the bad. But I would happily park miles away or pay full price for tickets if it meant my son no longer had Duchenne. But he does. And that isn’t going to change. Although our many Facebook posts show a family living a great life, the truth is that we only allow you to see what we want you to see. No one wants to read constant sad posts. But the reality is, we cry. Every night. And have done so every night since he was diagnosed 11 years ago.
Your perfectly healthy children have the rest of their lives to experience life, in all its glory. They will graduate, fall in love, travel, have children, and experience many many things over a period of 60+ years. But if you knew they only had a few more years, I’m sure you would try as hard as you could to pack an entire lifetime into the time they have. You would let them eat steak and oysters, knowing that eventually they will lose the ability to eat food that doesn’t come in a tube. You would organise for them to swim with dolphins, fly in a helicopter and airplane, ride a horse, go to Disneyland, snorkel, meet celebrities, and snow ski. You wouldn’t let them sit around, waiting to die, whilst you work your butt off to ensure financial security in the future. Not when there isn’t much chance of a future. You have to do it now. You would try to tick items off a bucket list, so that they will have lived an entire lifetime by the time they die. Everyone should be able to die with more memories than dreams. That’s what we are trying to do – make his dreams come true.
We are not just an ordinary family. We are an ordinary family, trying to give an extraordinary boy an extraordinary life.
You tell me that you get it. But you don’t.
And you should be glad that you probably never will.